Dis Breast Cancer Survivors Part IV - GAGWTA

[PlutoPony]

If anyone else would be willing to share their radiation experiences or experiences with Tamoxifan I would appreciate it.

Have been on Tamoxifen for ~18 months after a mastectomy and chemotherapy/targeted therapy, no radiation. I've not had problems taking it and it's CHEAP - amazing given what some of my treatment has cost! Some people have had real problems with side effects from Tamoxifen. My oncologist asked me let him know of any side effects and said he would try to minimize them if they came up, but to give it a month before I threw in the towel if I had problems. Had some aching the first couple weeks but it went away and I've been fine with taking it since.

The decision of whether to go with Tamox or AI"s is rather tricky as I understand it. Tamo has shown to be helpful in preventing reoccurance in pre/peri/post menopausal women but AI's are 0% effective for anyone NOT in menopause. So if there's the slightest chance that a person isn't considered fully in menopause they want to stay with Tamo.

At least that was the way it was explained to me.

Good luck!

 

[robinb]

Round 1 of chemo is finished!!! Round 2 starts on the 18th...almost there!!!

Do you only have 2 rounds of chemo? Hang in there!

and.....OMGoodness!! we leave next Saturday on our trip!! only 8 more days to get through....I am soooo excited!! I managed to get us reservations at The Tonga Room, in the Fairmont on Nobb Hill in San Francisco for Thanksgiving dinner.... we are water side and the band will be playing on the pool.... they are doing a turduckin dinner and I'm even excited about that!

The Fairmont is such a beautiful hotel! We stayed there the last time we were in SF and I had to pinch myself everytime I walked through the lobby. Enjoy your dinner .

I've only met the doctor 2x and they've been very quick visits. When my first mammo came back that something was wrong (6-7 months ago) the hospital told me I would need a consult with a breast doctor. They gave me a list of doctors they recommend. I took that list to my gyno's office and asked who they would recommend. He was one of 3 they recommended. I called my insurance and he was in-network and conveniently located in the same buildings as the Breast Center, my gyno and the in-network hospital so I went with him. I know, not a great way to pick a doctor but I didn't think this was going to lead anywhere.

So how do you check someone's credentials? And again, do I need a separate oncologist, do I need a plastic surgeon? I guess these are all questions I can/will ask him/his office but I'm hoping someone here can guide me as to what I should be looking for/asking.

I think that was the perfect way to choose a doctor! I think the most important part of the doctor/patient relationship is trust. I never felt the need to check my doctor's credentials, although I did go for a second opinion primarily because my insurance paid more with a different group. The second opinion solidified my desire to see the first doctor even though it was going to cost more money. I did ask both doctors how long they had been doing mastectomies, etc and I think I looked them up in WI's licensing website to look for any abnormalities. I choose the first doctor because he and I share the same outlook of "do the minimum" when it came to surgery. He also recommended a newer kind of anesthesia (paravertebral block) and he saw no reason to biopsy my lymph nodes. Now, I did need two surgeries because he had to go back in but that was OK with me.

You will need a surgeon to do the initial (partial or full) mastectomy. If you have a partial they will encourage you to have radiation. My doctor recommended it for me because my mass was over a certain size (sorry, I don't remember what the maximum for skipping radiation is). I think most doctors recommend it in most cases. My surgeon recommended a radiation oncologist. She was the one to plan the strength and placement of the radiation treatments. I have treatments 5 days a week and I see her once a week. I was also assigned a regular oncologist. He is the one who will prescribe my medicine (Tamoxifen, etc). I will also follow up with him on my yearly mammograms. I did not need plastic surgery since the majority of my breast in intact. It's a bit smaller now, but I don't care. I don't think you will know if you will need/want it or not until you finish your surgery and treatments.

 

[kofslinky]

I think that was the perfect way to choose a doctor! I think the most important part of the doctor/patient relationship is trust. I never felt the need to check my doctor's credentials, although I did go for a second opinion primarily because my insurance paid more with a different group. The second opinion solidified my desire to see the first doctor even though it was going to cost more money. I did ask both doctors how long they had been doing mastectomies, etc and I think I looked them up in WI's licensing website to look for any abnormalities. I choose the first doctor because he and I share the same outlook of "do the minimum" when it came to surgery. He also recommended a newer kind of anesthesia (paravertebral block) and he saw no reason to biopsy my lymph nodes. Now, I did need two surgeries because he had to go back in but that was OK with me.

I agree! I chose my oncologist because of a recommendation from a coworker of my mother's, and I couldn't be happier. She's very straight forward and matter-of-fact, which I like. She's also been really great about making sure I'm comfortable with every plan we make. I also did a second opinion at Dana Farber in Boston (I'm only a few hours away so it made sense), and my oncologist was actually thrilled with the idea and helped to set it up. My surgeon was picked partially by my oncologist and partially by my mother (she works at the same hospital and knew the doctor) and he's been great too. Being comfortable with your medical team is one of the most important things I found when dealing with my cancer and my treatment.

I'm so glad to hear how well people are doing right now! jillyb I'm sorry to hear you've lost so much weight, but I agree with smiley_face2 that using it as an excuse to buy a new outfit sounds great!

The update for me on my wound is really good. I can actually see a difference in the size of the hole, and that really helps my mindset. I'm on a 48 hour "vac"ation from the wound vac- the company sent out only half of the necessary supplies, and we didn't realize it until we needed a sponge and there weren't any. So I get a couple days of break and tomorrow we're back at it. I love the speedier healing, but my skin is enjoying a break from the constant plastic and adhesive. I just can't wait for this part to be over, and I can see a light at the end of the tunnel for this!

This week marks my three year cancerversary! I didn't do a whole lot of celebrating, but I have been in pretty good spirits all week. Going to the theater tomorrow to see one of the local high school's productions of Shrek the Musical.

Everyone keep doing well!! GAGWTA!

 

[CherylDan]

Hi ladies!

Just wanted to pop in for a quick update.....

Good news for me at the oncologist today......scans are stable, no change in the mets, so no treatment at this time, and they will rescan again in a few months (don't know what the tumor marker numbers are, takes a day or two to get that back) But to say I am thrilled is an understatement!!! I don't know when round three will start, but at least it won't be over the holidays.

GAGWTA!!!

 

[smiley_face2]

Hi ladies!

Just wanted to pop in for a quick update.....

Good news for me at the oncologist today......scans are stable, no change in the mets, so no treatment at this time, and they will rescan again in a few months (don't know what the tumor marker numbers are, takes a day or two to get that back) But to say I am thrilled is an understatement!!! I don't know when round three will start, but at least it won't be over the holidays.

GAGWTA!!!

I honestly could not be happier if it were me myself getting that good news!!! I am soooo happy Cheryl!! Start planning a trip up the Big Sur highway for spring with those girls of yours!!

 

[luvmarypoppins]

Cheryl - for the great news!

PrincessKs mom and jillyb - wishing you both the best with the mris on monday and hope its not too uncomfortable

Peg and robinb - thinking of you both too

kofslinky - Happy Cancerversary! and glad to hear the wound is improving. Have a great time at Shrek! When I was doing my wound vac research I saw that KCI was the only company who made this machine. I told my dh maybe we should invest in the stock

smiley - your trip sounds wonderful. My dh is going to SF around the 22nd I think.

Barbara - yes I think we all have so much to be thankful for, even in the hard times.

Linda -yeah to the Red Sox! But I hope the Yankees do better next year too!I cant believe your kids are driving!

Well today is the day my sister died so of course I dont do good on this day.

Also my poor dh has the toe trouble again. He called the reg. podiatrist and no luck so i had a list of 6 who took our ins. and he called them all and got the last one so he is going there today. He wants ds3 to go with him. He can hardly walk but insisted on going to work and said the pain is terrible and its his driving foot no less.

My echo was good they said. She wanted to inject me with something for better pictures but I refused. I am glad I had ds3 with me.

Then later was the new internist I gained more weight again. She doesnt think its my thyroid stuff however that number increased according to the endo last time. SO she wants me to go on a diet. fine with me. I am being really good and really cutting back on the carbs. I only had a sliver of a piece of ds 3s b day cake. I was really good.

I had a medical student who was slow as molasses and had an accent which was really hard for me to understand. So the internist rushed through me. She is still insisting on me getting the sleep study and holter monitor and I asked her if I could have the stress test at the hosp. She said she will look into it for me because I asked at the cardio office what happens if something goes wrong and they said, oh we will just call an ambulance. So I would rather be at the hosp. but they said they usually only do that for inpatients, so we shall see. Of course dh still does not want me to have this done. He is afraid something will go wrong etc.

Trying to plan the disney vacation. I think we are dong a split stay with the beach club and polynesian. Its all I could get with dh ff miles and I couldnt even get a discounted room or an ap discount room. Its gonna be busy there for sure! I also booked to see the candlelight processional with Sigourney Weaver. So dh will be happy because he wanted to see her.

I still need to book the airplane and room. I am such a last minute annie!

GAGWTA. Have a great week end everyone.

 

[Pea-n-Me]

Happy for everyone's good news!

I had scans myself this week for some pain I was having. Was holding my breath. But thankfully everything looked good except for some female issues. What a relief!

lmp, I saw some good rates at the Poly on Travelocity the other day. Keep watching, they go up and down, but book right away if you see a rate you like. I booked the GF that way and got a great deal. There is construction going on, that's the only thing. (It wouldn't bother us, tho.)

 

[Feralpeg]

So happy to hear so much good news! Let's keep up this trend!

Started the boost today. I only have four days of radiation to go. For the first time, I felt really beat after the treatment, but the end is in sight!

Have a great weekend ladies!

 

[CherylDan]

So happy to hear so much good news! Let's keep up this trend!

Started the boost today. I only have four days of radiation to go. For the first time, I felt really beat after the treatment, but the end is in sight!

Have a great weekend ladies!

Yay for only four more days! Sorry to hear that the radiation is catching up with you. It is harder the last week with the boost........it's like they look at you and say "oh yeah, still have some energy???? Well, let's fix that!". . Hopefully the weekend will be a good break.

Happy for everyone's good news!

I had scans myself this week for some pain I was having. Was holding my breath. But thankfully everything looked good except for some female issues. What a relief!

Yay for more good news! hopefully the female issues are not too serious.

Cheryl - for the great



Well today is the day my sister died so of course I dont do good on this day.

My echo was good they said. She wanted to inject me with something for better pictures but I refused. I am glad I had ds3 with

Trying to plan the disney vacation. I think we are dong a split stay with the beach club and polynesian. Its all I could get with dh ff miles and I couldnt even get a discounted room or an ap discount room. Its gonna be busy there for sure! I also booked to see the candlelight processional with Sigourney Weaver. So dh will be happy because he wanted to see her.

Sorry about your sister.
Good news about the echo! I hope you are able to get the stress test set up at the hosp like you want. And your poor DH! Hopefully he will be on the mend soon.
I love WDW at Christmas! Sounds like a great trip.

I honestly could not be happier if it were me myself getting that good news!!! I am soooo happy Cheryl!! Start planning a trip up the Big Sur highway for spring with those girls of yours!!

Actually, I've just started thinking about that!!! Only just me and DH, and for the week between Xmas/New Years. We have never spent any time in San Fran, so maybe a split stay downtown, and then three nights somewhere else?? I have no idea. But I'd love suggestions!! I will for sure look into the Fairmont on Nob Hill. Your upcoming trip sounds amazing, btw!

The update for me on my wound is really good. I can actually see a difference in the size of the hole, and that really helps my mindset. I'm on a 48 hour "vac"ation from the wound vac- the company sent out only half of the necessary supplies, and we didn't realize it until we needed a sponge and there weren't any. So I get a couple days of break and tomorrow we're back at it. I love the speedier healing, but my skin is enjoying a break from the constant plastic and adhesive. I just can't wait for this part to be over, and I can see a light at the end of the tunnel for this!

So glad to hear your wound is sounding much better. I'm sure the "vac"action has been a great break!

Sooooo, our condo saga continues.....we are still waiting to hear on choice #2, but since our contract with them has expired, today we put a new offer on choice #3. It is a foreclosure, so should (yeah, right) be a quick answer. We only put in a two week contract....figured that way there isn't too much risk with the earnest money. Now HOPEFULLY one of the two will respond! Seems rather ridiculous that we have been trying to buy a property - with cash - for the past five months and can't even get a response to an offer, at their asking price, no less.

DD29 called last night and invited us to their apt in Chicago for Thanksgiving. That will sure be a nice change of pace! Not sure where she is going to put everybody since it is rather small, but, yay!!!! I don't have to cook. They live just off Michigan Ave, so we are hoping for nice weather to be able to walk around....all the lights and decorations are beautiful there.

Hope you all have a great weekend. GAGWTA!!

 

[Pea-n-Me]

I love this lady! Good for her!

http://www.boston.com/lifestyle/hea...fore-surgery/G7KxEA40iWYgMaeQJhe3NI/blog.html

 

[snappy]

I love this lady! Good for her!

http://www.boston.com/lifestyle/hea...fore-surgery/G7KxEA40iWYgMaeQJhe3NI/blog.html

Amazing video! It does not get any better than this. Thanks for sharing, Pea n me.

 

[smiley_face2]

Actually, I've just started thinking about that!!! Only just me and DH, and for the week between Xmas/New Years. We have never spent any time in San Fran, so maybe a split stay downtown, and then three nights somewhere else?? I have no idea. But I'd love suggestions!! I will for sure look into the Fairmont on Nob Hill. Your upcoming trip sounds amazing, btw!

We can't afford to stay at the Fairmont! lol... we will do dinner and drinks there though, or drinks at the Top of the Mark. We have stayed twice now in an awesome 2 room suite at a hotel called Columbus Motor Inn. I know sounds like old not nice....but it really is nice! it's also a 5 minute walk to the next street over and the start of the cable cars, and another 5 minutes down to Fishermans Wharf. If you want to know more, I can post pictures of the place, and the area. We had a balcony where you could look down to the water, or over to Coit Tower, there is also a few different tour bus trip locations 2 minutes down the street. We are in fact staying there again for a 3rd time coming up! We can't do it all, and while we have splurged once in a while on places like The Disneyland Hotel, for the most part I will take staying in less expensive places if we can go more often, or stay longer! You can look it up on trip advisor great reviews. I request a room on the 3rd floor, facing Columbus street, at the end closest to fishermans wharf. We also pay an extra $5 for a fridge, but they do have free parking which is almost unheard of in San Fran. One time we went on a full day tour of the city which was awesome because you see all the highlights, with plenty of stops to explore, and see so much, you also get to take a ferry over to Sausalito and time there for lunch or shopping. Last time we went with the hop on hop off tour, so we could choose where we wanted to spend the most time at. We will do that again this time. Feel free to ask away, I will try to help as much as I can! Oh yes...they also had Tempurpedic beds!

 

[CherylDan]

Smiley, I will look into that hotel! I'm getting dizzy trying to figure this out! I never figured there would be so many choices. We have made some progress - decided to stay in SF for three nights, and then go to Monterey/Carmel for four. I'm trying to decide if it is feasible to not have a car for the SF part....seems like driving there is a real hassle. I'd love to see your pictures!

 

[smiley_face2]

Smiley, I will look into that hotel! I'm getting dizzy trying to figure this out! I never figured there would be so many choices. We have made some progress - decided to stay in SF for three nights, and then go to Monterey/Carmel for four. I'm trying to decide if it is feasible to not have a car for the SF part....seems like driving there is a real hassle. I'd love to see your pictures!

Quick post before bedtime!! ..... you do not need a car in San Fran!! we park ours in the parking lot under the hotel and don't get in it until we leave again! That's one reason we like this hotel, it is so central to everything you want to see, or the fun ways to get there like cable car, muni, or even taxi... we find it to be about the size of downtown Vancouver, everything is so close. A cab from the waterfront station where the ferry goes across to Sausalito, back to our hotel cost us I think $6
When we drive into San Fran, we drive around a bit, you can drive right down twisty Lombard street on the way to the hotel! Four nights in Carmel and Monterey is more than enough!! 3 would probably even be enough. One place we always want to stay and have not yet in Carmel, is Mission Ranch. It is the old ranch owned by Clint Eastwood and has what is supposed to be an amazing dining room, and he often eats there! but they have a 2 night minimum stay, so we haven't done it yet. You can drive 17 mile drive around through Pacific Grove and Pebble Beach.... stunnnnnning scenery!! you can stop at the lone cypress along the way...I don't know if you watch any old Hitchcock movies, but so many of the scenes are around this whole area and San Fran...it's fun to see them in person! We light candles in Grace Cathedral in San Fran for our son... the doors are exact replicas of the Gates of Paradise on the church in Florence Italy, cast from the original doors in real bronze, they shine like gold! anyway there are a couple of hotels we have stayed at in Carmel as well, I will post more about them tomorrow so excited you will be seeing this beautiful part of the world! If I were a lot younger and wealthy, I would move there!

 

[PrincessKsMom]

Still trying to remain positive. Surgery scheduled for tomorrow and doctor calls me at 4:50 pm to tell me they found a lesion in the right breast from the MRI so now I have to get an MRI guided biopsy on that before the surgery. He said he really doesn't feel it's anything but if it is it would mean a second surgery if we went ahead tomorrow so better to do it all at once. I was mentally ready for tomorrow and now I'm in a state of chaos again. I asked about future treatment and he said he's hoping after surgery I'll be done but he won't know for sure until after surgery. So damn frustrating. Now this will all coincide with the holidays.

 

[robinb]

Still trying to remain positive. Surgery scheduled for tomorrow and doctor calls me at 4:50 pm to tell me they found a lesion in the right breast from the MRI so now I have to get an MRI guided biopsy on that before the surgery. He said he really doesn't feel it's anything but if it is it would mean a second surgery if we went ahead tomorrow so better to do it all at once. I was mentally ready for tomorrow and now I'm in a state of chaos again. I asked about future treatment and he said he's hoping after surgery I'll be done but he won't know for sure until after surgery. So damn frustrating. Now this will all coincide with the holidays.

{{hugs}}. That does sound scary. The thing about MRIs is that they can be inaccurate with false positive "shadows". I hope that's what's happening with you.

Good luck with your surgery tomorrow! I'll be thinking of you. If you take Vicodin be ready for constipation -- I wish I had remembered that!

 

[Pea-n-Me]

It can be difficult when plans change, especially when it involves more uncertainty. Hang in there. As hard as it is, it is better to get all answers now before going forward, PrincessKsMom.

 

[fortwildernessishome]

Still trying to remain positive. Surgery scheduled for tomorrow and doctor calls me at 4:50 pm to tell me they found a lesion in the right breast from the MRI so now I have to get an MRI guided biopsy on that before the surgery. He said he really doesn't feel it's anything but if it is it would mean a second surgery if we went ahead tomorrow so better to do it all at once. I was mentally ready for tomorrow and now I'm in a state of chaos again. I asked about future treatment and he said he's hoping after surgery I'll be done but he won't know for sure until after surgery. So damn frustrating. Now this will all coincide with the holidays.

I am SO sorry to read this.....

Best of luck to you and I am sending prayers/positive thoughts your way.

 

[fortwildernessishome]

Smiley, I will look into that hotel! I'm getting dizzy trying to figure this out! I never figured there would be so many choices. We have made some progress - decided to stay in SF for three nights, and then go to Monterey/Carmel for four. I'm trying to decide if it is feasible to not have a car for the SF part....seems like driving there is a real hassle. I'd love to see your pictures!

We did a HUGE trip west in August 2012 and went to a ton of National Parks from Montana to California. We stopped in San Francisco for two days/one night. We stayed at a Holiday Inn that was one block up from Fisherman's Wharf. It was around 300.00 night and parking was another 50.00 or so. It was the most expensive place we stayed on our three week trip. It was nothing special, but it was clean, safe and easy to walk to everything.

Our favorite thing we did was visit Alcatraz. I reserved our tickets over a month in advance. In the summer it was crazy and totally sold out. I felt bad for all of the people that wanted to go over, but couldn't. The National Park service is in charge of Alcatraz and we really enjoyed it.

The other thing we did was rent bikes on Fisherman's Wharf and biked over the Golden Gate. We all LOVED it and I hope to do it again someday. However, I was just 5 months out from finishing my chemo (for ovarian cancer) and I was still FAR from myself and I was exhausted biking to the bridge. The way back was lots of fun, because it was mostly downhill. My teenage boys and my husband all took it slow with me, but boy, that was a workout!!

We really loved SF and even though we weren't there for long, we made the most of the time we had!

 

[fortwildernessishome]

I just want to thank those of you that prayed for me over my recent biopsy and also rejoiced with me that I got good news!! It felt good that I could post here for support. Since my diagnosis with ovarian and uterine cancer two years ago, I feel like I have tapped my family and friends out with worry and support for me. I am glad that I could come here. Thanks again